Genetic Paternalism: Striking the Balance Between Expert Perspective and Patient Autonomy

A constant tension that spans all areas of biomedical research and clinical practice is the question of how experts can act in the best interest of patients and research participants without assuming they know what is best for those individuals.

On March 15, 2021, NHGRI’s Policy and Program Analysis Branch hosted a panel discussion - Genetic Paternalism: Striking the Balance Between Expert Perspective and Patient Autonomy - exploring this tension at multiple levels in genomics research and medicine, from patient-provider interactions to research engagement with marginalized communities.

The panel discussion provided researchers and providers with strategies for thinking about their responsibilities with respect to their patients and ideas for engaging patients and participants in decision-making about their own health and data – both systematically and at an individual level.

Chapters:
0:00 - Introduction
2:49 - An ethical framework for directiveness in genetic counseling practice (Leila Jamal)
20:31 - Sickle Cell Disease: A Marginalized Community in the Genomic Spotlight (Ashley Buscetta)
32:14 - Patient perspectives: how social and historical contexts shape patients’ needs (Candace Henley)
41:46 - Q&A Session

Panelists:
Leila Jamal, Sc.M., Ph.D., CGC, Johns Hopkins/NIH Genetic Counseling Master’s Degree Program
Ashley Buscetta, F.N.P.-B.C., C.W.O.C.N., NHGRI Health Disparities and Medical Genetics Branch
Candace Henley, Blue Hat Foundation

Moderator:
Carla Easter, Ph.D., National Human Genome Research Institute